A thief gave me the world

I fought it. The symbol of weakness sat by itself in the guest room where I never went. Whenever I struggled to walk past the door, I purposefully averted my eyes, looking down or away. I did anything I could to avoid dealing with the wheelchair the young guy delivered in October of 2007. It was an ominous sign of my fading independence that I hated both for its invasion of my house and what it stood for.

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The View From Nicky’s Seat

The following is a Facebook post from Nicky Williams Dexter. She shared her daily reality and it gripped me. She and I share the struggles of FSHD yet we have different experiences. I’m reposting this with her permission. If you’d like to contact her, she accepts all friend requests from folks interested in FSHD. I encourage all of you to drop her a line of support on Facebook. Continue reading

The truck battery didn’t last, but the friendship did

On June 2, 1992, my family moved from Louisville to Brandon. I met a few kids that first summer before school started, but when band camp rolled around a couple weeks before the first day of school, I got a jump start on making friends. So, on my first day of high school, I wasn’t totally lost. There were familiar faces peppered throughout the student body. Little did I know that I’d met my best friend throughout high school on the first day of drum camp. Continue reading

The night my chair tried to kill me

One particular Wednesday night in March of my 30th year, I was at my parents’ house sitting at a table in the living room while working on my laptop. They were at church, and I was there by myself. It had been raining for several days and was still raining. I could hear the fat drops as they pelted the roof above me.
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